CRPS – A Balancing Act

It’s NERVEmber! November is Nerve pain awareness and Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome Awareness month.

I attended the iPain Summit yesterday which was streaming live from their Facebook page-

I enjoyed.

Yesterday was the 5 year anniversary to my husband’s 3rd heart attack, the 4th was 11 months later. Reflecting, I was in constant fight, flight and freeze. This illness directly impacts the fight flight stress response alteady. Trauma after trauma. I was also attempting to recover myself from my last suicide attempt which was earlier that same year in 2017.

That year, even though I was still mentally unstable from various happenings of 2016, was the beginning of healing.

I’ve made the journey without Healthcare and for the last few years without the use of my Spinal Cord Stimulator, and also without self medicating with alcohol. It may sound as if I’m complaining,… it’s been hard, and it hasn’t eased up. I can’t even talk about some of it, which means I’m forced to carry those things, and constantly divert my mindset to something good. Instantaneously.

One of the topics presented at the iPain Summit was Caregiving. I’m both a caregiver and a…

I’m not even sure how to refer to myself because I’m not a patient anymore. Even when the pain communities refer to us as CPP’s, ugh, but wait chronic pain person works for me instead of chronic pain patient. Woot!

Nah. Still doesn’t work. The ussumption would remain. Not all of us are patients!

Every last aspect of my existence must be balanced to be able to lay my head down at night and feel blessed to have ended another day ok.

I was listening to Ken Taylor speak on caregiving while preparing our dinner for the evening. I cook all our food. It’s all homemade. Heart healthy as best as I can for my husband.

It seems and feels like it takes me all day and if I deviate from my daily routine in any way it worsens my overall experience.

My Facebook memories reminded me yesterday that my Narcolepsy diagnosis via sleep study was 10 years ago. That’s been a mission of it’s own.

When Barby was presenting I had propped my phone under my lil table top Xmas tree that I have on a shelf and got a 10 minute stationary walk in. It was a walk n watch. Ha.

On Saturday I tried to attend a crps support group meeting. I just don’t understand Zoom. I attended another time, audio only, and could at least partially participate. I was trying video this time, but couldn’t get the audio to work. I couldn’t figure out settings to enable it. Then I crashed the phone twice and didn’t try a 3rd time. Learning disabilities.

My husband installed the Zoom app on his phone just so he could help me learn to navigate for future use.

We’re each others Caregivers.

I’m home alone much of each day. He leaves for work at 5:15 a.m. and if on time, he works until 2:30 p.m. Dinner is usually served by 3:45 p.m.

Sounds nuts to some, I’m sure. And that’s perfectly fine. It’s part of my balancing act to have dinner ready early. It’s routine.

It’s all a balancing act and I’m exhausted. I’m not always able to differentiate mental or emotional fatigue from Narcolepsy and other sleep disorders, yet the body fatigue is extreme because of pain and comorbidities.

I put a piece of roast in the crockpot about 90 minutes ago. It’s nearly 11:30 a.m. now. I started writing this 2 houes ago.

I start my days early, I have to in order to get dinner, dogs, and dishes done, no matter. I’m down for the day by 5 and often asleep by 8:30 p.m.

I suppose some of this comes with age and I’m most definitely not a spring chicken anymore.

#StrongerThanPain #StrongerThanCRPS

Green Vietnam with a dash of Super Green MD this morning. My Spinal Cord Stimulator use to be my life preserver, now Kratom is.


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